The Journal The Authority on Global Business in Japan

Data sharing is an important part of today’s global society, and the healthcare industry increasingly relies on it for diagnosing rare diseases. Dr. Makoto Suematsu, president of the Japan Agency for Medical Research and Development (AMED), spoke to members of the American Chamber of Commerce in Japan (ACCJ) on April 13 at a luncheon hosted by the ACCJ Healthcare committee at the Tokyo American Club about the role of data sharing in medical research and the mission of his organization.

Suematsu began by saying that Japanese don’t like sharing their ideas, experiences, or data with competitors, citing fragmentation as the biggest obstacle to advancements in medical research.

To address this, he said, the Japanese government is keen to combine the efforts of the Ministry of Education, Culture, Sports, Science and Technology; the Ministry of Economy, Trade and Industry; and the Ministry of Health, Labour and Welfare.

This is more difficult than it sounds. Suematsu described AMED as the catalyst that brings these ministries together, but said there are many barriers. These include: the gap in information sharing among universities, researchers, and industries; rivalries between universities; differing visions and goals between scientists, physicians, and bureaucrats; and bureaucratic infighting.

AMED’s policies encourage a more effective healthcare system, and Suematsu explained how he aims to change the status quo.
“I would like to make the inflexible [and fragmented] funding system a flexible and unified one,” he said. One of the main barriers is the very conservative mentality of university hospitals officers.

Japanese universities, he added, are fragmented and protective of their own research. He suggested “externships” rather than internships to encourage fellows to look beyond their university hospital.

Suematsu is also keen to build upon a Memorandum of Cooperation that AMED signed with the US National Institutes of Health in January 2016 to establish collaboration and encourage global alliances.

When working with researchers and institutions globally, language becomes an issue. Suematsu expressed his desire to have information available in English to facilitate an international platform.

One of the key matters to be tackled is diagnosis of rare diseases. Suematsu spoke at length about the Initiative on Rare and Undiagnosed Diseases (IRUD), a nationwide consortium set up by AMED that connects patients, medical doctors at hospitals and community clinics, and researchers. The goal is to integrate their efforts and expertise and to use this information for diagnosis.

Fragmentation among physicians and bureaucrats extends the time it takes to diagnose these diseases, and Suematsu sees global data sharing as a solution. This, along with the creation of new matrices to assess the projects for budgeting, is essential.

AMED has also organized the IRUD diagnostic committee, controlled by a central institutional review board to assess and approve private issues and protocols in Japan. So far, more than 220 university hospitals, core regional hospitals, and private clinics have joined.

As Suematsu’s presentation made clear, collaboration and effective data-sharing systems are needed to advance medical research in Japan and around the world. Progress has been made through alliances with the United States and Austria, but barriers remain. With AMED’s leadership, Japan can overcome them and continue to improve healthcare for all.

Maxine Cheyney is a staff writer at The Journal.